That Damn Fenestration...

I get so many people that ask me all sorts of questions about Tucker and his Congenital Heart Disease.  With everything that he has endured in his short life, someone asked me once, several years ago, "What is it like to have a heart child?"  Although I don't remember the exact long complicated answer that I gave, I think that today's answer would be very different.  

My new answer would be..."You know that feeling that you get when your a brand new parent and you put your child to bed for the first time and you keep checking that newborn to make sure that they are still breathing.  And they are, but then, 2 minutes later you check them again, and you can clearly see that they are fine, but then your mind starts to race, what if they aren't ok and you didn't check them, SO you check them again, because you will think the worst case scenario.  IF you could bottle up those feelings, ALL of that worry, sadly...THAT is EXACTLY what CONGENITAL HEART DISEASE is LIKE!  It's like a slow torture, where you are always waiting for the worst case scenario.

So although we have had a great few years, there is always such dread that comes over us when Tucker has to go back into Children's for any type of testing.  This year Tucker's Cardiologist suggested that we have a cardiac catheterization to look at how his IntraCardiac Fontan (last open heart surgery) was performing.  So last Tuesday June 20th, we reported to Boston Children's Hospital for our Pre-cath testing in the Pre-op Clinic.  

Tucker was such a trooper that he got a special visit to Davis Farmland when he was done with all of his testing for the day.

The next day...Tucker reported for his Cardiac Catheterization to Boston Children's Hospital with all of his good luck animal's in tow...

Tucker was first case, no doubt because he is notorious for being "not your textbook" case.  It always seems that Tucker is never the "norm" AND what never happens to others ALWAYS happens to him.  So his procedure went well, however, our cardiologist told us after the procedure that Tucker went into "heart block" during the cath.  (Heart Block Definition:  Heart block is a disease or inherited condition that causes a fault within the heart's natural pacemaker due to some kind of obstruction (or "block") in the electrical conduction system of the heart.) When they tested the fenestration (hole that they made during his last open heart surgery) it worked better when it was balloned closed, so Tucker is now the proud owner of a device called an Amplatzer in his little half of a heart.  

It seems that this new hardware is causing some drastic fluctuations with his heart rate, which could just be his new "normal".  We were discharged and asked to keep Tucker sedentary for several days while his scar tissue could start to grow into his new hardware so that it did not shift internally.  In addition, we have to bring him back next week to run more tests to make sure that his heart rate is still increasing with activity.  I guess that this is common in single ventricle kids post surgical intervention.  While Tucker was in patient, his night RN noticed that his heart rate goes down into the 40's (normal is around 70)when he sleeps, however, it does increase during activity when awake, so it is something that our cardiologist will continue to watch closely in clinic.  

So we were urged to update Tucker's Emergency Action Plan, make him a dental appointment and another Cardiac Neurodevelopmental Study appointment and to enjoy our next 6 months between cardiac appointments.